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Drawing a Line in the Sand

This Thanksgiving holiday, I am grateful for all the advocates in my life, and for a being a better parent today than I was exactly one year ago because of them.

Throughout our 6-year old son’s life, he has had a series of physical and emotional delays. He was a late walker, suffered from continuous colds and fevers, and at age two narrowly survived a life-threatening bone infection. On the flipside, he was playful, smart, happy and creative. He spent hours building intricate Lego structures and writing funny, imaginative story books. But simple things, like putting on socks, often seemed insurmountable for him.

As he got older, his physical setbacks became more pronounced; he refused to sleep, refused to potty train, refused to go anywhere without the stroller. His obstinacy became more explosive, and even the smallest change in his routine would set him off. Soon we were the parents fireman-carrying our kicking and screaming child home after family outings, and were too scared to go to restaurants for fear of his outbursts. At first we blamed it on the terrible twos, then the terrible threes, but as he got older and the outbursts became more erratic and unmanageable, we became fraught.

One particularly rough morning after he started kindergarten at the age of 5, he punched me in the face then ran straight through heavy street traffic. I had just taken him on his first train ride to school and somehow he had convinced himself that we were going the wrong direction by looking at the train map. I had to restrain his body as he screamed “STUPID MOMMY!” while hitting me until we finally reached our stop and he ran from the turnstiles right into rush hour traffic. As I chased him in my high heels juggling a cup of coffee, heavy laptop bag, school backpack, and purse, I realized that I had grossly underestimated the severity and danger of this situation.

The least helpful thing people did at the time was label. He’s LAZY because he won’t play. He’s BAD because he won’t listen. He’s SPOILED because you had a nanny. He’s autistic because he’s different. And the worst label of all was in my own voice: BAD MOTHER. I travel for work and leave my husband alone with the children. Is it really worth it??

I can’t tell you how many times my husband and I felt the lonely distress of a parent with a child with some kind of diasibility over these years. How many times we’ve woken up in the middle of the night wondering what people are thinking, feeling a sense of loss, alone, the unknown, or worse a loss of control. Years of psychological evaluations, possible diagnoses, therapists, babysitters, and doctors. Years of being a constant watchdog, apologizing. My heart was breaking. What values are we imparting on our son, and how are we still keeping our marriage together??

If you share these distresses of a difficult child, then you know that you cannot punish or discipline problems away. But as the parent, you will be shamed. Blamed. There will be long uncomfortable silences. Everybody will tell you to be better disciplinarians.

But what these outsiders don’t see are the many humbled moments we experienced as a parent in these desperate moments. The moments that told us what kind of discipline worked, and more importantly what didn’t. When we put him into his room, turned off the lights, shut the door and left him screaming in darkness for hours until he passed out on the floor, only to awake an hour later with night terrors that lasted 30 petrifying minutes. They didn’t see his room laid bare after we confiscated every Lego and removed his bed sheets, demanding an apology. But they also didn’t see the piles of sticker charts for good behavior that we had worked on over many, many months.

Exactly one year ago today, a school administrator sent me an email coolly stating that he had screamed so hard that he wet his pants and they had to have him sit on the bench in the hall alone for 15 minutes. We had a meeting with the principal and were informed that he had been kicked out of after care, indefinitely. His behavior would not be tolerated. My husband and I were devastated. They had drawn a line in the sand. What more could we do??

Fortunately, we did have some advocates during this difficult time. People who told us we had done everything right. That we were good parents. To keep going. That Asher was bright and wonderful and worth fighting for. And for those of you – I am ever so grateful. I tell this story because we listened to those voices and our lives are different today because of you.

This year, we made a drastic decision to move to a new neighborhood, buy/sell our house, enroll in a new public school, re-enroll in Kindergarten and have a fresh start with the fall. It’s now been one year since that very low moment labeling myself a bad mother, six months since we moved, and four months at his new school. And in these few months, his progress has been nothing short of astonishing.

He is inspired. His art teacher has inspired him to create intricate story books filled with rich color and text long into the night instead of watching TV.

He is confident. While he used to be aloof and uncomfortable climbing playground structures, now he gathers all his friends around him to learn a new “leaf game” that he has invented. He is popular.

He is proud. This morning, for the first time, he was able to put on a pair of winter gloves. Historically, we had resolved to just let his hands be cold to save the effort from another fight. But when his fingers easily slipped into place without any frustrations, he literally jumped for joy and chased me around the room with hands outstretched screaming “Freezer Boy!!”

He celebrates. Last month he had lunch with his school principal which he earned by being a star student. He talked about it for days and days and days. He felt special.

He is in control. His new school has given him tools to meet his sensory needs in the classroom to help regulate his own body. He has wobble chairs, weighted shoulder pads, snack time on demand. They allow him time to take preventative measures. Nobody is labeling him.

We still have our problems. He still needs a lot of coaxing to do little things like putting on socks. His first response to anything contrary is still anger, but his more deep-rooted frustrations have become more clearly defined so that we are now able to appropriately tackle the problems in a more positive, productive way. He puts himself to bed. MILESTONE!! He has excellent bathroom manners. It’s no longer daunting to pick him up from school because parents talk to me about parties and play dates. I realize, for the first time, he is happy. We are happy. That is a milestone.

Years of setbacks are slowly being erased. The truth is, he’s just a different boy. And he was born this way. Recently he was diagnosed with dyspraxia – a neurological disorder that results in impaired motor, memory, judgment, processing, and other cognitive skills. There is an enormous disparity with his intellectual abilities and his cognitive and motor skills which has been the root of all his frustrations. But to me it’s not a label. I know that both of my children will grow up to be attentive, clever, compassionate, empathetic, creative, confident contributors to society. We are going to give our two boys the tools they need to succeed like compassion and patience by demonstrating those behaviors in the home. Because we are good parents.

And so, this year, I am grateful for patience, time, humor, and wine wine wine. I am grateful for the people who reminded me that I am a good parent, and for them I hope to do the same. Compassion and respect are universal truths. In fact they are the moral foregrounds by which our little enclave exists. And that is where I draw MY line in the sand.

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3 thoughts on “Drawing a Line in the Sand”

Amanda – this is such a heartfelt and wrenching post and I am SO happy that it has all kinds of positive action and good news â milestones! â included in it. You ARE good parents and wonderfully good people, so while it is a test to have to go through this, you two are committed and caring – and funny â and it shows. Who knew SUBURBS would be the answer to the quiz question? But good for you for finding that answer and acting on it – and even more, good for you for celebrating it ! I so remember watching you two fall in love – itâs nice to see into your lives, messy tho they may be, and know that you are such good parents and raising two cutie boys the best you can – which is all there is ! The rest works itself out.

I bet itâs also a blessing that you work where you do and have seen for many years first-hand how parents carry heavy loads with grace and patience – good for you for helping them -to help you!

Just had to respond when I read this first thing this morning with my cup of coffee – HAPPY THANKSGIVING and big hugs –

Thank you for sharing this story. Life ain’t easy, is it? But we hope its worth it. My bestie works as an occupational therapy helping students with sensory integration and some of the tools the new school is offering reminded me of her work. xo